Study Finds ‘Mortality Gap’ Among Middle-Aged Whites

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Don’t blame suicide and substance abuse entirely for rising death rates among middle-aged white Americans, asserts a new study out Friday.
They’re both factors, but the bigger culprit is almost two decades of stalled progress in fighting leading causes of death — such as heart disease, diabetes and respiratory disease — according to a Commonwealth Fund analysis of data from the federal Centers for Disease Control and Prevention. The fund studied actual and expected death rates, and causes of death, for working-age adults from 1968 through 2014.
Its analysis follows a much-discussed study circulated late last year that found death rates had been rising for non-Hispanic, white Americans between ages 45 and 54 since 1999, following several decades of decline. The two Princeton economists who authored that study — one was Angus Deaton, last year’s winner of the Nobel Memorial Prize in economic science — attributed the turnabout to rising rates of drug abuse, suicides and alcohol-related liver disease.

“White Americans are now facing a substantial ‘mortality gap’,” according to Commonwealth, which cited higher-than-expected death rates for white adults ages 45 to 54 in 2014.
Since 1968, death rates had fallen nearly 2 percent a year across most middle-age groups, races and ethnicities. Other high-income countries experienced similar trends, Commonwealth said.
But that shifted in 1999. From 1999 to 2014, death rates in the U.S. rose for non-Hispanic white adults between the ages of 22 and 56, peaking at about age 30 and age 50, the fund said.
Without a health crisis, mortality rates for those white Americans should have been falling, the authors said.
According to Commonwealth’s analysis, death rates for that group would have been expected to fall 1.8 percent annually, but instead mortality rates in 2014 resulted in more than 100 excess deaths for every 100,000 middle-aged white adults.
Commonwealth said the “death gap” was most pronounced in seven states: West Virginia, Mississippi, Oklahoma, Tennessee, Kentucky, Alabama and Arkansas. The difference between observed and expected rates was narrowest in New York, New Jersey, California, Connecticut, Minnesota, Massachusetts and Illinois, the study found.
Deaths from suicide and substance abuse explain about 40 percent of the “mortality gap,” while 60 percent is tied to death rates failing to drop as expected for nearly all of the top-ranked causes of death of middle-aged whites, Commonwealth said.
Commonwealth suggested the root causes might be tied to that population’s decline in social and economic status.
“For working-age whites — especially 45-to-54-year-olds — we are witnessing regression that has little precedent in the industrialized world over the past half century,” the report said.
For example, they have lower incomes, fewer are employed and fewer are married, it said. Research published last year found that the higher death rate for the group was concentrated among whites without four-year college degrees.
Commonwealth said its findings increase concerns about continuing lack of health insurance — some states with the highest mortality rates did not expand their Medicaid programs to low-income adults. But insurance expansion alone won’t close the mortality gap, it said.Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Federal Officials Clarify Rules On Getting New Health Coverage After A Move

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After the open enrollment period ends on Sunday for buying coverage on the health insurance marketplaces, people can generally sign up for or switch marketplace plans only if they have certain major life changes, such as losing their on-the-job coverage or getting married. Following insurance industry criticism, last week the federal government said it will scrutinize people’s applications for such “special enrollment periods” more closely, including one of the most commonly cited reasons — relocating to a new state.
The Centers for Medicare and Medicaid Services (CMS) issued new guidelines to help consumers and those who assist them in enrolling understand what qualifies as a permanent relocation versus a temporary one.

People who move to a new state and “intend to reside” there may be eligible for a special enrollment period on the marketplace to pick a new plan. There’s no waiting period to establish residency for coverage after people move.
Still, determining residency intentions could be a head scratcher. CMS clarified that traveling to a state for business, pleasure or to get medical care will not meet the residency requirements for a permanent move.
People may have more than one residence and may qualify for marketplace coverage in both places. Someone who keeps two homes in different states and spends entire seasons or lengthy periods of time in each could sign up for marketplace coverage in either or both states after each move, according to CMS.
Students and other children younger than 21 are generally assumed to have the same state of residence as their parents. However, if “you’re under 21, you can attest you live elsewhere and intend to reside there,” you may qualify for a special enrollment period to buy a new marketplace plan, said Sabrina Corlette, research professor at Georgetown University’s Center on Health Insurance Reforms.
Insurers have complained that people are waiting until they become sick, then claiming they’re entitled to a special enrollment period for marketplace coverage. In response, the federal government announced that a number of events will no longer trigger a special enrollment period, including certain errors in marketplace income and tax credit determinations.
In addition, the administration said it will examine a sample of records from consumers who were deemed eligible for special enrollment periods because of a permanent move or a loss of coverage to determine if the rules were properly applied. If consumers should not have been granted access to a special sign-up period, they could be subject to penalties for perjury, CMS said.
Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Combined Effects Of Maternal Obesity, Diabetes ‘Substantially’ Raise Autism Risks

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While the incidence of autism spectrum disorder has increased in recent years, what’s behind it remains relatively mysterious and even controversial. But a major study could shed new light on some of the maternal health factors that may increase children’s risk of developing the condition.
Autism is a neurodevelopmental disorder marked by difficulties with communication and social interaction as well as repetitive or obsessive behaviors. The range and severity of symptoms can vary widely.
The study, which was released Friday and appears in the February issue of the journal Pediatrics, followed almost 3,000 children who visited the Boston Medical Center between 1998 and 2014. It used electronic health records to track whether these children were diagnosed with autism, along with factors like the mother’s pre-pregnancy weight and whether she had been diagnosed with diabetes before or during her pregnancy.

Though previous research has looked at the roles of maternal obesity and diabetes on autism risk, this study is the first to examine both the independent and combined effects of the two.
The researchers found that of the nearly 3,000 children in the study, about 100 were identified as on the autism spectrum.
They also concluded that obese women who contracted diabetes while pregnant — a condition known as gestational diabetes — were about three times as likely to have children with autism. Women who were obese and had diabetes before pregnancy were almost four times as likely. In addition, children with autism were more often boys, more often born before 32 weeks and more often had very low birth weight. Beyond being obese and diabetic, their mothers were also more likely to be older.
Having just one of the conditions, however, posed only a slight risk increase.
Overall, though, the risk was “substantially higher” when women had both, according to the study.
It “calls attention to the idea that maternal prenatal health and maybe even pre-pregnancy health may be important factors for autism — and may be important opportunities for protection from autism,” said study co-author Daniele Fallin, who chairs the department of mental health and directs the Wendy Klag Center for Autism and Developmental Disabilities at the Johns Hopkins Bloomberg School of Public Health.
The findings are important because, if doctors have a better sense of autism’s causes, they can try to reverse the current trend lines and stem its growth, Fallin said.
In 2010, the most recent year for which there’s data, about 1 in 68 children were estimated to have autism. That’s a contrast to 10 years prior, in 2000, when 1 out of 150 children were believed to have it. Experts say part of the growth likely is because people are simply getting better at recognizing and diagnosing the disease. But, according to the Centers for Disease Control and Prevention, the disorder is also probably occurring more often than it used to.
“The cost per family per year of having a child on the spectrum is enormous — therefore societal costs are enormous,” Fallin said. “If you can do anything to stem the tide of rising prevalence, or even drop the prevalence, then absolutely, you should. Not only individual families benefit, but society benefits.”
A different study published last year in the Journal of Autism and Development Disorders estimated that taking care of people with autism cost the country about $268 billion in 2015 — a figure that accounts for medical expenses, other kinds of caregiving and the decreased productivity both from people who care for autistic relatives and for adults on the spectrum.
If the increase in prevalence continues at its current rate, this expense will grow markedly, that study noted.
From a cost standpoint, then, the new research underscores the importance of preventing obesity and diabetes, said Paul Leigh, a professor of public health sciences at the University of California, Davis, who authored the autism cost study. Because of the autism tie, “there are more reasons to be worried about [obesity and diabetes], and to direct resources to removing this problem.”
The Pediatrics paper is significant, both for its findings and for its comprehensiveness in examining medical records from a large sample, said Alycia Halladay, chief science officer at the Autism Science Foundation. It suggests that if policymakers and insurers put more money into treating diabetes and obesity, the public as a whole could benefit, especially if that fuels a decline in autism cases.
“Instead of demonizing mothers with diabetes, we need to be using this as an opportunity to help them mitigate their risks as much as possible,” she said.
But, she added, it’s important to recognize that the study examines two of many factors that could put a child at risk for autism. Giving birth later in life, getting a viral infection while pregnant or being exposed to air pollution or certain medications can also be factors — so preventing autism will require a multi-pronged strategy.
“I don’t think you can look at any one of them and say, ‘Oh, it’s because of this, it’s because of air pollution, it’s because women are waiting to have babies,’” she said. “It’s a combination.”Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Obamacare Sign-Ups Strong In N.C., Despite High Rate Hikes

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North Carolina’s average premium increases on the Obamacare exchange are among the highest in the country, according to federal data. The Obama administration warned this open enrollment period, which closes Jan. 31, could be particularly tough because many of the sickest, and therefore most motivated, people already bought plans.
And yet, sign-ups in North Carolina are on pace to be substantially higher than the two previous years. Roughly 95,000 more North Carolinians selected a plan during the first two months of this enrollment period compared with the last one. Across the country, only two states using the federal exchange saw more sign-ups over the same period: Florida and Texas.
Sue Martin, who’s from the small town of Mebane, North Carolina, about two hours northeast of Charlotte, said, “I hate to sound hyperbolic, but it’s kind of a matter of life and death.” Her experience is a case study of how the health law is playing out in the state and how individuals have navigated surging premiums.

Martin couldn’t afford treatment for Lyme disease and a thyroid condition without health insurance. She got covered through healthcare.gov two years ago, and a federal subsidy cut her premium to $238 a month.
But the insurance company cancelled that plan for 2016 and suggested a similar one, with a big caveat. Martin said it would cost her $491 a month.
“To go up that much on premium, that’s prohibitive for me,” she said. “There’s no way, being a retired single lady. That’s, well, double what I was paying before.”
The company behind that plan, Aetna, declined our interview request. Instead, Aetna provided a statement that said its goal is to use rates that’ll cover the cost of doing business.
In North Carolina and nationwide, health insurance rates were still a work in progress in this third year of Obamacare open enrollment. Coverage got cheaper in states like Indiana and Mississippi but more expensive in North Carolina, Arizona and Pennsylvania, among others, according to federal data.
Insurers aim for a sweet spot regarding premium price tags. They want them high enough to cover the cost of people’s medical care, but low enough to attract customers.
Georgetown University researcher Sabrina Corlette said when the Obamacare exchanges first opened, “for many insurance companies, that was a real guessing game.”
“They didn’t know what kind of policyholder they would attract,” she said. “They just had no idea what their costs would be.”
Now that companies have actual data on who signed up and how much care they needed, “they’re saying, ‘Whoa, wait a minute, we didn’t price the way we should have to actually reflect our costs, and so we need to adjust,’” Corlette said.
In North Carolina, the adjustments were huge. All three insurers on the exchange raised average premiums at least 20 percent. Sue Martin’s insurer, Aetna, raised rates 24 percent. The state’s dominant player, BlueCross BlueShield of North Carolina (BCBSNC), raised rates 33 percent.
Managing Actuary Brian Tajlili said BCBSNC landed a long way from that sweet spot.
“The assumption was the sick would come in the first year in 2014 but then in 2015, healthier people would enroll,” he said. “We made that assumption. Many others in the industry did as well.”
Preliminary research is mixed on whether that happened nationally. But Tajlili said it didn’t in North Carolina.
“Another thing that we had assumed is many people would go in, get a lot of services done all at once in the first year — something we sometimes call pent-up demand — and that cost would level out after that,” he said. “That proved to not be the case either.”
Instead, he said, the enrollees’ care started off expensive and stayed that way.
The bad projections meant premiums weren’t even close to covering costs, Tajlili said, and BCBSNC lost more than $120 million on that part of its business.
Still, it’s a small part of the business: less than 10 percent of BCBSNC customers are on the exchange. The premium increases of Obamacare plans don’t affect most people who have insurance through their jobs.
So were North Carolina’s insurance companies just worse at predicting who’d sign up?
“Premium increases really vary state by state, and there hasn’t been, at least at this point, a really clear pattern that has emerged,” said Elizabeth Carpenter of Avalere Health. She consults with insurance companies and other clients navigating the exchanges.
North Carolina Insurance Commissioner Wayne Goodwin has his own theory for why premiums are so high in this state.
“North Carolinians would have had lower rate adjustments and more competition and more choices for plans if we had gone a state-based route,” he said.
Goodwin said Republican state lawmakers and the governor made a mistake by choosing the federal exchange (as about three dozen other states did) rather than setting up their own.
The data is not clear on that. Jon Gabel at the University of Chicago has researched this point.
“Last year, the rate of increase in state-based exchanges and the federal exchanges was basically [the same.] There was no statistical difference,” he said.
Government data show that a benchmark plan for Indiana dropped an average of 13 percent, while the same plan in Oklahoma rose an average of 36 percent — and both states use the federal exchange.
Gabel acknowledged, though, that there can be advantages to the state exchanges.
“You have much more decision-making power, that is for sure,” he said.
In other words, you’re in control of the red tape. Commissioner Goodwin argued that could have allowed North Carolina to attract more insurance companies.
“That alone would’ve been a major factor for consumers here if there were more companies available,” Goodwin said.
The data does back up the idea that more competition equals lower premiums. North Carolina and the other states with the highest increases tend to have the fewest insurance companies selling on the exchange.
Back in Mebane, Sue Martin shopped around healthcare.gov and found a new plan she could afford, albeit with skimpier benefits.
“Even if the premiums are a little higher than I like or everything isn’t covered or whatever, I still have the option to see my doctor,” she said. “I can still afford my medications.”
One factor working in Martin’s favor is that federal subsidies rose in North Carolina, along with the insurance rates. That’s because the premium increase for North Carolina’s second-lowest-cost silver plan — the benchmark plan — was 22.8 percent.
Martin is among about 150,000 North Carolinians who already had coverage on the Obamacare exchange but switched plans during this open enrollment, according to a federal report. She’s also among the roughly 90 percent of North Carolinians who signed up with the help of federal subsidies.
This story is part of a reporting partnership that includes WFAE, NPR and Kaiser Health News.Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

California Voters Will Have Their Say On Drug Prices

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California voters will weigh in this November on a high-stakes ballot proposition intended to help control the cost of prescription drugs – the latest attempt to limit soaring prices that have prompted public criticism nationwide.
The proposition would require the state to drive a harder bargain with drug companies so it doesn’t pay more for medications than the U.S. Department of Veterans Affairs.
The initiative would affect about 5 million people whose health care is covered by the state, proponents said. They include retired state workers, inmates and some low-income residents in the Medi-Cal insurance program.
Across the nation, prices have spawned state legislative proposals as well as federal hearings and task forces. Dozens of bills have been proposed to address the high cost of specialty drugs, according to the National Conference of State Legislatures.

Political leaders in Virginia and New Jersey have introduced legislation that would require manufacturers to report production costs of some high-priced drugs. A bill in New Mexico would create a task force on pharmaceutical pricing, while a proposed law in Washington state would cap consumers’ out-of-pocket spending on prescription medications.
Even presidential candidates have offered proposals to make expensive prescription drugs more accessible.
Among the catalysts for public outrage are the sky-high price of treatments for diseases such ashepatitis C and the unapologetic markups for specialty drugs by former pharmaceutical executive Martin Shkreli.
“It’s a universal issue,” said Geoffrey Joyce, a professor and director at the USC Schaeffer Center for Health Policy & Economics. “How do we control these prices and at the same time not dampen incentives to innovate?”
Limiting prices could bolster state budgets in the short-term but might diminish the drug companies’ incentive to create future drugs, he said.

The California ballot measure is sponsored by the AIDS Healthcare Foundation, a Los Angeles-based organization that provides HIV and AIDS care around the world. “Everybody is angry about drug prices,” said Michael Weinstein, president of the group, which has proposed a similar initiative in Ohio. “When is enough enough?”
Pharmaceutical Research and Manufacturers of America (PhRMA), the chief opponent of the measure, says it is misleading and would “negatively impact millions” of Californians by causing drug prices to rise.
Kathy Fairbanks, spokeswoman for the opponents, said price controls for one segment of the population would only shift the cost to others. “It’s not going to help veterans, families, kids,” she said.
Recent polling by the Kaiser Family Foundation showed that 77 percent of Americans believe making medications affordable to people with chronic conditions is a top health care priority for politicians. And 72 percent said drug costs are unreasonable. (Kaiser Health News is an editorially independent program of the foundation.)
The California initiative is being closely watched, as states cope with high-cost specialty drugs and drug manufacturers fear a potential precedent in a bellwether state.
The pharmaceutical industry is already outspending advocates of the initiative by a large margin. With the election more than nine months away, several companies have contributed a total of nearly $39 million to defeat the proposition. Pfizer and Johnson & Johnson, among the biggest contributors, have donated almost $6 million each.
By contrast, proponents have raised only about $4 million, according to the Secretary of State’s office, which announced in December that the initiative had qualified for the ballot.
Though support for the proposition has been led by the AIDS Healthcare Foundation up to this point, Weinstein said he plans to reach out to other groups. “We have the people on our side and the political mood could not be better,” he said. “This is the beginning of real reform in drug pricing.”
Similarly, Fairbanks said the opposition campaign plans to contact veterans, patient advocates and businesses. “We expect to have a broad coalition in the near future,” she said.
The measure would exclude the vast majority of Medi-Cal beneficiaries, who are in managed care plans that negotiate their own prices. It also would not affect people on Medicare, with employer-sponsored coverage, or who those purchase private plans on the open market or through Covered California, the state’s insurance exchange.

The state Legislative Analyst’s Office has not yet been able to conduct a fiscal analysis of the measure because some of the price data is not publicly available and it’s impossible to know how drug manufacturers would respond to caps, said Amber Didier, an analyst in the nonpartisan state office.
The lack of public information on prices could make enforcement of the initiative impossible, Fairbanks argued.
For people covered by state programs, the costs of specialty drugs largely fall to taxpayers rather than individual consumers. But some Medi-Cal recipients still support curbing prices.
Chaz Whatley, 31, said medication she takes for bipolar disorder costs about $550 a month and Medi-Cal covers all but $1. Whatley, an unemployed teacher in Los Angeles, worries that if her drugs become more expensive, Medi-Cal won’t pay and her doctor may have to prescribe something less effective.
“It’s a great idea to regulate the prices in some sort of way,” she said. “Otherwise, it’s just making the pharmaceutical companies really rich.”
Consumers in the private market already have some new protections from high out-of-pocket drug costs.
Beginning this year, most people with plans through Covered California, the state insurance exchange, won’t have to pay more than $250 a month per prescription. The exchange is the first in the nation to set caps on co-pays. And Gov. Jerry Brown signed a law late last year with similar effect for other privately insured residents who take expensive drugs for cancer, epilepsy and other diseases. That law takes effect in 2017.
San Diego resident Maggie Crine said she hopes there will be more such relief for patients in the future. She takes care of her mother, who has private insurance and pays over $200 a month for medications to treat chronic lung disease and high blood pressure. “We struggle to pay,” she said. “Where is the money going?”
Attempts by California state legislators to impose more transparency on pharmaceutical companies haven’t gotten much traction. Assembly member David Chiu (D-San Francisco) withdrew a bill this month that would have required drug manufacturers to publicly report profits and costs of production, marketing and advertising on any drug priced at more than $10,000 annually.
Anthony Wright, executive director of the consumer group Health Access, said sponsored a ballot measure in 2005 that would have pressured them to reduce drug prices for low-income Californians, but it was defeated after the drug manufacturers spent tens of millions of dollars to oppose it, Wright said.
The California Association of Health Plans, the state’s principal insurance lobby, supported the Chiu bill but hasn’t taken a position on the ballot initiative, said spokeswoman Nicole Evans. Nevertheless, Evans acknowledged the intensity of the public backlash against high drug prices.
It started as a “low roar,” she said. “Now it’s just deafening.”
Blue Shield of California Foundation helps fund KHN coverage in California.
This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Despite Kvetching, Most Consumers Satisfied With Health Plans: Poll

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Bashing insurance companies may be a popular pastime, but a poll released Thursday found most people were satisfied with their choices of doctors and even thought the cost of their health coverage was reasonable.
The Kaiser Family Foundation poll revealed that 71 percent of insured adults younger than 65 considered the health care services they receive to be either “excellent” or “good” values. (KHN is an editorially independent program of the foundation.) A majority — 61 percent — said their insurance plan was either excellent or good, given its cost.
While many insurance plans are limiting the networks of doctors and hospitals to restrain prices, the survey found that a majority of people didn’t mind. Fifty-four percent of insured adults younger than 65 said they were “very satisfied” with their selection of doctors. Another 34 percent said they were “somewhat satisfied.” Only 12 percent said they had to change doctors because they were not covered by their insurance plan.

People lacking insurance — frequently because they found it too expensive — were less pleased with the value of their health care services. Forty-eight percent considered those services to be “only a fair” or “poor” value: nearly double the percentage of those with coverage who thought their care wasn’t worth the money.
The poll found health care was not a top priority for voters in the upcoming presidential election. Only 6 percent of registered voters considered the cost of health care and insurance to be the most important factor in their presidential choice, fewer than those who were focused on the economy and jobs, terrorism or gun control.
Twenty-eight percent did say health care costs would be “extremely important” in determining who they would vote for. About the same number expressed similar concern about gun control, the situation in Iraq and Syria, and dissatisfaction with government.

Just 4 percent ranked the 2010 health care law as their highest concern — fewer than those who were focused on the economy and jobs, terrorism, dissatisfaction with government or gun control. Republican candidates have been promising to repeal the law if elected president.
The poll tested voter interest in a major proposal by Sen. Bernie Sanders (I-Vt.) in the Democratic presidential primary to create a national health care program similar to Medicare that would insure everyone. The poll reported that 54 percent of voters said this was a very important factor in their presidential decision.
A foundation survey from last month found 81 percent of Democrats favored the approach, sometimes called “Medicare for all” or single-payer, while 63 percent of Republicans opposed it. Independents were roughly split. That survey did not include the costs of the program in the questioning, however. The expense was the primary reason Sanders’ home state of Vermont abandoned its own version of a single-payer plan last year.
The latest poll was conducted between Jan. 13 and Jan. 19 among 1,204 people. The margin of error for the full sample was +/- 3 percent.Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

A Deeper Look Into The Planned Parenthood Videos And Indictment

A grand jury in Texas that was investigating Planned Parenthood instead indicted two abortion opponents on Monday who made undercover videos of the organization.
KHN’s Julie Rovner joined four other panelists Wednesday on WAMU’s The Diane Rehm Show, where they discussed what makes an undercover investigation criminal and the ongoing political battle over Planned Parenthood’s role and funding.
To listen to the show, click here.Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Medical Advocates Can Help Guide Patients On Difficult Care Choices

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Stan and XuXia Smith learned from an ultrasound midway through the pregnancy that their son would be born with an often-fatal congenital heart defect. In the first week of the baby’s life, they got more bad news: Some major organs were incorrectly formed and mislocated inside Travis’s tiny body. They faced a long journey.
“I felt like I’d been hit by a tidal wave. I couldn’t process the information I was being given fast enough, and I knew we’d need someone to help us translate and evaluate the enormous amount of information we were being bombarded with,” Stan Smith said.
The Chicago couple hired Dan Polk, a patient advocate and retired neonatologist whose specialty is working with sick babies and their families. Polk helped the Smiths understand the complexity of their son’s condition while building an experienced health care delivery team, and he has guided them through the intricacies of Travis’s treatment. More than two years after his birth, he still has medical issues that require Polk’s counsel.

“I was trained to take care of patients but found myself spending too much time away from the bedside,” said Polk, who took up patient advocacy in 2013 after 35 years in practice. “Being an advocate for babies and parents has allowed me to do what I was trained to do: take care of patients.”
There are perhaps 250 to 300 patient advocates for hire in the United States, one professional association estimates. Some advocates such as Polk have clinical backgrounds and know how to navigate the health care system. They may accompany patients to appointments and facilitate doctor-patient conversations in patient-friendly language. They may also handle tasks such as prepping for medical appointments, finding the right doctors and even deciphering medical bills and health insurance plans.
Advocates aren’t cheap — their rates can start at $100 an hour or more, depending on experience and credentials — and insurance doesn’t cover them.

Smith, 69, runs an economic and financial consulting firm. His wife, XuXia, 41, takes care of Travis and their 5-year-old daughter, Blake Sarai TeiTei Smith. They have the resources to pay for a top-notch advocate. Polk’s standard hourly fee is $300, but his rates depend on the client and the situation. When he travels for out-of-town consultations and treatments, as he sometimes does with the Smiths, his daily rate is $1,500 plus expenses.
Smith said advocates can sometimes help a client avoid unnecessary expenses that they might incur by going it alone.
“Without Dan, the doctors in Boston and Chicago never would have imagined that we’d be able to understand the level of complex information we asked for,” he said. “But with Dan, we could not only travel at their speed and understand what was going on, we could collaborate in coming up with better solutions and pathways for care.”
Physicians sometimes say complicated things, Polk said. Just because their words are heard doesn’t mean they are understood. In the Smiths’ case, he noted, 15-minute conversations with doctors often led to three-hour discussions with Polk to talk over what they meant.
Working with the Smiths, Polk constructed plans to address Travis’s medical issues.
Preparations for repairing Travis’s heart were among the most technically and emotionally challenging. The first step was to help the Smiths understand what was wrong and the solutions that might keep Travis alive. Then the parents had to decide who should perform the procedure and where. And for the surgery at Boston Children’s Hospital, Polk accompanied the parents to explain the operation as it unfolded.

“A good advocate must have the ability to evaluate complex medical situations, formulate a plan to address them and implement it,” Polk said.
That’s not all. One lesson Polk learned is that there’s a time to talk and a time to listen.
“Initially, listening is probably more important to understand the entirety of a situation, but at some point, you have to start to act,” he said.
Polk helped the family avoid pitfalls. Once, a doctor recommended that Travis get immediate surgery on an intestinal abnormality.
Polk suggested the Smiths get another opinion. A second doctor suggested they wait and see. A third physician agreed, and so did Polk and the Smiths. An immediate operation could have led to scar tissue that might have caused an intestinal blockage. “We can’t say what would have been the result of a trip or fall, but we do know that many families who we met on the same journey have lost their children,” Smith said.
Physicians see value in patient advocates, too. Dr. Pedro del Nido, who operated on Travis’s heart at Boston Children’s Hospital, praised Polk for applying his medical knowledge and communication skills to present information clearly in a way that allowed for rational, thoughtful decisions.
Most doctors welcome advocates, said Dr. Sima Kahn, a patient advocate and an obstetrician and gynecologist in Seattle. “Doctors are so overworked that they … seem thrilled to discover that people who do what I do exist and that I am part of a team that can take pressure off them.”
When Keith Cotton was diagnosed with Stage 2 brain cancer two years ago, he and his wife hired Kahn. She helped them find the best specialists, discover options and ask the questions that they didn’t know to ask themselves.
After Cotton had a tumor removed, he wasn’t sure he wanted chemotherapy and radiation, but Kahn helped him to see the benefits. “I realize now that not having the treatment would have been a bad idea,” said Cotton, 39, whose wife, Megan, gave birth to their first child, Grace, in June.
Finding advocates such as Polk and Kahn isn’t always easy. Teri Dreher, the founder of North Shore Patient Advocates in Chicago, recommends weighing an advocate’s educational and practical experience. Someone with complicated health issues might benefit from an advocate with a medical or nursing background. And advocates who lack clinical backgrounds may have personal experiences that make them excellent choices.
Advocates can help patients make better decisions, said Trisha Torrey, director of the Alliance of Professional Health Advocates.
“When you don’t know what you don’t know, you don’t know what questions to ask, and that’s when a patient advocate can be indispensable,” she said.
The Smiths celebrated Travis’s improving health and the new year in Disney World. Stan Smith says his son’s neurologist has told them that Travis should be back on track in his mental and physical development next year.Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Consumers Cut Costs By Combining Limited Coverage Health Plans, Despite Penalty Risks

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Last fall, Shalonda Brown decided she’d had it with paying nearly $1,000 a month for a family health, dental and vision plan through her job at an independent lab in Dallas. Casting about for an alternative, she checked out individual family plans on healthcare.gov. No dice: Their income was too high to qualify for subsidies and comparable coverage wouldn’t be any cheaper.
So Brown instead cobbled together three different policies that each provide limited coverage for her, her husband and 2-year-old daughter: a short-term plan with a $10,000 deductible that provides up to $1 million in coverage for just under a year; a critical illness plan that pays a $20,000 lump sum if one of them is diagnosed with invasive cancer, heart attack or stroke; and a dental plan that provides $1,000 in coverage. The total monthly tab: $390.
“I feel like it’s just giving me everything I need as of right now,” said Brown, 31. “Me and my family, knock on wood, there’s nothing urgent or major to deal with now.”

Under the health law, most people are required to have insurance that meets minimum standards or pay a fine. Limited benefit policies such as short-term, critical illness, accident, dental and vision plans don’t qualify.
In 2016, the penalty is $695 per adult and $347.50 per child, or 2.5 percent of household income, whichever is greater.

Brown knows she’ll face a penalty if her family doesn’t have comprehensive coverage this year, but she’s willing to pay the fine. “When I look at what I’m saving having a short-term plan versus regular insurance, it’ll balance out,” she said.
Faced with sky-high premiums and high deductibles for traditional plans, it’s not surprising that some people are looking at other options, experts say.
“They may be making the best decision they can for themselves given their financial and health situation,” said Sabrina Corlette, research professor at Georgetown University’s Center on Health Insurance Reforms. “But it’s a roll of the dice, and if something bad happens, they could find themselves on the hook for a very big bill.”
Under the health law, regular health plans are prohibited from imposing lifetime or annual limits on coverage, or from turning people down because they’re sick. Short-term policies — which generally impose dollar limits on coverage, don’t cover treatment for pre-existing conditions and may refuse to renew a policy if someone gets sick — don’t meet those standards.
But many people are taking an interest in the plans nevertheless. In 2014, when the provisions of the health law took effect, the number of people applying for short-term plans rose 130 percent, to 147,383, at online health insurance vendor eHealth.
Sales of critical illness and accident policies, which generally pay a lump sum if someone has a qualifying event such as a car accident or cancer diagnosis, are also on the rise. Sales of critical illness policies on the individual market grew to $311 million in 2014, a 24 percent increase over five years, according to financial services research company LIMRA. Non-group accident policy sales reached $430 million in 2014, a 13 percent rise over five years.
As consumer interest in limited benefit plans has grown, some carriers are bundling critical illness and accident insurance policies together, or offering a single plan that provides coverage for both, says Nate Purpura, vice president of consumer affairs at eHealth.
The typical purchaser of accident or critical illness coverage at eHealth is a self-employed person who already has a comprehensive insurance plan and wants some extra financial protection, says Purpura. It’s less common for people to cobble together different limited plans to rely on as a replacement for regular insurance.
“Short-term insurance is designed for a short-term gap, and accident and critical illness plans are not designed to replace major medical,” Purpura said.
With an average lump sum payout of $31,000 for an individual market critical illness plan, according to insurer Gen Re, the policies won’t come close to covering treatment for a serious illness.
“We just want to be sure that people understand what they’re buying and understand the limitations of these plans,” says Anna Howard, a policy principal at the American Cancer Society Cancer Action Network.
For her part, Shalonda Brown hopes to get regular insurance again soon. Her husband has applied for government job with comprehensive health insurance that, she hopes, would be more affordable than her employer plan.
Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Check The Fine Print: Some Work-Based Health Plans Exclude Outpatient Surgeries

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Libbi Stovall couldn’t believe it last month when she looked at the fine print in her company’s 2016 health plan, which supposedly meets the strictest standard for employer obligations under federal rules.
The insurance paid for inpatient hospital care, office visits and diagnostic imaging. But it provided no coverage for outpatient surgery, which accounts for two out of every three operations in the nation, according to hospital industry data.
After reviewing the plan, she realized “their policy would not give my family the coverage we need,” said Stovall, 52, who lives in Carrollton, Texas, and has a history of back problems, including outpatient surgery in 2014 to remove a cyst. Her doctor, she added, said that “I absolutely have to be on an insurance plan that covers both outpatient and inpatient hospitalization.”

Worse for her, being offered such a plan through her workplace, an international staffing firm called Open Systems Technologies, barred Stovall from federal subsidies to buy more comprehensive coverage in the online insurance marketplaces.
Her experience illustrates the latest chapter in the story of employers and insurance designers pushing the limits of the Affordable Care Act.
Last year regulators blocked companies with millions of lower-wage workers from claiming that coverage with no inpatient hospital benefits met Obamacare’s strictest standard for large employers.
Now that those so-called “skinny plans” aren’t allowed, insurance administrators and many cost-conscious employers are purporting to meet the rules with a new version that excludes another major category: outpatient surgery. The new plans may not survive regulatory scrutiny any more than the old ones did, some experts believe.
“I really wonder whether they can do that,” said Timothy Jost, a law professor at Washington and Lee University in Virginia who is an authority on the health law. “Refusing to cover any outpatient physician surgical services is arguably a violation.”
Outpatient surgeries — those without an overnight hospital stay — happen in a hospital or a freestanding surgery center. Hernia repairs, knee arthroscopies and repairing bone fractures are typical. They generally cost less than an inpatient operation but can still come to tens of thousands of dollars.
Leaving such procedures out of a plan can save money for employers but leave workers with crippling bills.
Unlike insurance sold to individuals and small businesses through online marketplaces, large employers are not required to offer a list of “essential health benefits.” Instead, they must offer minimum value — roughly comparable to that of a high-deductible, “bronze” marketplace plan — as determined by an online calculator and regulatory guidance, or face a penalty. There is also a lesser standard for large employers — “minimum essential coverage” — that triggers different fines for noncompliance. But nearly all workplace-based plans that offer some types of preventive care meet this requirement.
“It was clear that hospitalization had to be covered” by large employers after regulators ruled in February that skinny plans lacking inpatient benefits did not meet minimum value, said Anne Lennan, president of the Society of Professional Benefit Administrators, a trade group for claims processors. “But then the question was, ‘How much?’”
Depending on how regulators respond, new skinny plans lacking outpatient surgery benefits will help answer that question.
For 2016, such insurance has been marketed primarily to staffing companies, home health agencies, hoteliers and other lower-wage employers that had historically never provided major medical coverage. Those are the same firms that were sponsoring skinny coverage a year ago, industry consultants say.
It’s unclear how many companies said yes for this year, although last year about half the 1,600 corporate members of the American Staffing Association were interested in the plans with no inpatient coverage. The trade group didn’t conduct a similar study for the latest skinny plans, said senior counsel Edward Lenz.
More than 30 employers working with EBSO Inc., a Minnesota-based benefits company, have implemented 2016 minimum-value plans that cover inpatient hospitalization but not outpatient surgery, said EBSO’s president Bruce Flunker. He did not identify them.
JFC Staffing, based in Camp Hill, Pennsylvania, offered a skinny plan lacking outpatient surgery benefits to nearly 700 eligible employees this year, said Cathy Reichelderfer, the company’s chief financial officer.
JFC struggled with simultaneously conforming to Obamacare rules, offering coverage that wouldn’t break the budget and giving workers insurance they wanted, she said.
“As an employer, we want to do the right thing,” she said. On one hand, offering a minimum-value plan means “potentially somebody losing their subsidy” to buy alternative coverage in the marketplaces, she said. On the other hand, overpaying for insurance or offering no insurance — and subjecting JFC to expensive Obamacare fines — could wipe out hundreds of jobs “because we can’t stay in business,” she said.
Because workers offered minimum-value coverage are presumed to have adequate insurance, they’re not eligible for tax credits to buy marketplace policies.
This is the second year under the health law in which large employers must offer affordable, minimum-value coverage or face penalties of up to $3,000 per worker.
Temp companies, restaurants and other businesses that never offered major medical coverage before are “certainly keen to minimize this cost,” said Kevin Schlotman, vice president of employee benefits at Benovation, an Ohio consulting firm.
For many workers at such employers, even plans lacking inpatient benefits or outpatient surgery — but paying for office visits, emergency room care and prescriptions — are a significant improvement, say consultants selling those plans and companies offering them.
“We’re not trying to provide a program that doesn’t have good coverage,” Flunker said. “We’re trying to provide a program that is meeting the current regulation and is affordable” for employers as well as workers.
OST, Stovall’s employer, offered a minimum-value plan for 2016 without outpatient surgery benefits that is designed and administered by Key Benefit Administrators, one of the country’s largest independent claims-processing firms. KBA was one of the leading promoters of last year’s minimum-value coverage with no inpatient benefits.
After Kaiser Health News and The Washington Post wrote about those policies in 2014, federal regulators issued clarifying rules saying that large-employer plans must provide “substantial coverage of inpatient hospital and physician services” to qualify as minimum value. The debate now is whether “substantial coverage” of “physician services” should include outpatient surgery.
Not surprisingly, the American Hospital Association “is deeply concerned” about plans that exclude it, a spokeswoman said.
New York-based OST, which says it is one of the largest privately held staffing firms in the world, declined to comment, as did KBA’s general counsel Wallace Gray. Aaron Albright, a spokesman for the Department of Health and Human Services, referred a reporter to the regulatory language requiring “substantial coverage,” without referring to specific plans.
Libbi Stovall turned down OST’s minimum-value plan. Even without tax credits to help pay for it, she bought insurance on healthcare.gov for 2016 that covers both inpatient care and outpatient surgery.
“I fear that other contracting companies are giving their employees the same substandard insurance coverage and figure that these employees are too afraid to say anything for fear of retaliation,” she said. “I am standing up for these people because I don’t want to see anyone go bankrupt” from uncovered medical bills.Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.